Tuesday, April 25, 2017

Monthly Update

I'm not sure how I used to be able to blog 3 x week because I can't seem to come up with much to say more than monthly lately.  I think part of it is that I used to write about my kids a lot and now that they are older and teenagers, I'm not allowed to write anything that might be even remotely embarrassing to them.  Obviously, that takes away a lot of blogging material. haha  Oh well, soon enough they will be out of the house and I will be missing their bitchy faces.   So on to things I can talk about.....

I have my final surgery planned for 5/24!  Expanders are coming out and implants are going in.  Woot!  I'm not super excited about having another surgery, but I am super excited about getting through the recovery and going back to a normal life.  I'll need general anesthesia again (ugh) but this one is a much shorter and easier surgery.  I don't have to stay overnight and I should be able to go back to work on Monday.

Back before all the cancer business, I had signed up to run the Sugarloaf Marathon and make a BQ attempt.  That is clearly not happening this May, either the BQ or even running a marathon, so I opted to drop into the 15K race instead.  So many of my friends are going to be there and running that I didn't want to miss out.  So I planned to have my surgery directly after the Sugarloaf weekend so I could still participate, but have my 3 weeks of no exercise recovery not mess up my entire summer.

I'm imagining that this surgery will not be nearly as involved as the first one.  The plastic surgeon said he planned to use the existing incision sites so I won't have any new scars.  It sounds like it's just a matter of removing the expanders and placing the implants.  We had some discussion about what type of implants and of course, I have no idea now what we decided on other than I know it's not the "rough" ones that have some incidents of a secondary blood cancer (no thanks) and it's a type that isn't completely round--more teardrop shaped?  I think?  But not super tear drop shaped because those ones needed drainage tubes and no way, no how, did I want those again.  They said I'm scheduled for 75 minutes (which is literally nothing compared to the first!) and a couple of hours in recovery and I'll be able to go home for lunch! woo!  My daughter has a lacrosse game that night I was hoping to be able to see so it looks like that will probably happen!

I CANNOT WAIT TO BE ALL DONE WITH THIS!

I've been taking the tamoxifen for a bit now and haven't had any side effects that I know of.  Unless weight gain is one of them.  Well, I haven't really gained any weight but I haven't lost any either.  And one would think that I would go back to my normal weight of 143-5ish after I started running and exercising again.  But here I am still at 150.  So maybe I need to monitor my food a little better, I'm not sure.  Or maybe it's because I'm 46 now and getting old. Whatever it is, I don't drop weight as easily as I used to. Also, I have been getting pretty warm at night while sleeping and one of the side effects is hot flashes.  I wouldn't call them hot flashes, but I do wake up and I'm sweating.  But that isn't a big deal. I just throw off a cover and go back to sleep.  So I guess tamoxifen will be in my life for a while.

As I said, I have been running around 5 days a week, always at least 4 miles and sometimes more on the weekend.  The weather is starting to get a little bit warmer--it's kinda spring here in Maine.  Full on summer on Easter and then back to winter two days later.  ugh.

sporting my Boston Marathon visor my friend bought for me.  I LOVE it.

So anyway, that's whats going on in my world right now.  I just want to get back to the business of living my boring, normal life.  And on that thought, I will leave you with this picture of the ugly town I live in.  Poor me.




Tuesday, March 28, 2017

Limbo

So here I am in limbo.  The waiting zone.  The already-started-but-not-quite-finished yet zone.  That time in-between the first surgery and the final surgery.  It's where you feel mostly normal, but not completely because you know you aren't done yet.  There's more fun to be had right around the corner.

I've reached the point where the expanders are filled as much as I want them to be.  And holy hell, I don't understand AT ALL why anyone would want to get implants or really large breasts.  For example, I have a hard time shaving my armpits because the side boob is so round that there's this valley of pit that is hard to reach.  On the plus side, I guess if I ever wear a backless dress, my side boob will be fantastic.  So there's that.

Also, it's impossible to sleep on your stomach.  Even side-stomach is hard.  And perhaps that will be better when the implants are in, but these damn expanders are hard as shit.  (well, actually more like hard as books... shit is kinda soft but you get what I'm saying.)  It's a bit like sleeping with two softballs under your chest.  Like princess and the pea but on steroids.  So that sucks.

And cleavage is overrated.  I've never had it before so I've never had the pleasure (?) of sweating between my boobs while exercising.  I can't say that I care for it.  Also, food drops down in between them now which never happened before.  Snacks for later, I guess.

In other more depressing news, a good friend of mine recently got diagnosed with a similar, but much more aggressive cancer than mine.  She's currently preparing to start chemo this week and then double mastectomy in a few months.  I am forever thankful I don't need chemo but sad beyond belief that she does.

All this cancer showing up everywhere with no rhyme or reason has really got me thinking.  Thinking about the time we have here on this planet and how to make the most impact.  Thinking about the type of person I am and how I want to be remembered.  I think, for the most part, I am a good person and do my best to help others when I can.  But I know I can do better.  I know I fail far more times than I succeed and I often think about things I'd like to do better but then life and work and kids get in the way and I fall back into my old ways and habits.

I'm making a list of the things that I fail at in hopes that I can look at it on occasion to remind myself where to do better.  Here goes....

1.  I fail at calling and visiting my parents.  I need to do better at this.  In my defense, they both did move far away from me but I still need to make more of an effort to visit them.  Calling is easy.  I just need to do it.

2.  I fail at calling and visiting my friends.  I need to take the time to call not just when I have something in MY life that I want to talk about.  It shouldn't always be about me.

3.  I fail at putting the needs of others before my needs.  (Except my kids.  I'm really good at putting their needs first, even in those times when I shouldn't!) Even when I'm struggling, I have so much more than a lot of people and I should be better at sharing--both my time and resources.

4.  I fail at birthdays and Christmas.  I'm horrible.  It doesn't always have to be about buying a gift--in fact, it should be less about the gift buying and more about spending time or calling or sending a card.

5.  I need to volunteer more.

This list is by no means all inclusive--I'm sure there are plenty more ways I could be a better person, but it's a start anyway!

Have any of you had something happen in your life that makes you think about things differently or try to be a better person?  Let's all pick one thing and try to do better just for today.  I'm going to call my dad tonight on my way home from work.  Share what you did, I'd love to hear. :)



Monday, March 13, 2017

6 week update

Six weeks?  Has it really been six weeks since my surgery?  It's hard to believe because I am in such a different place than I was just three weeks ago.  So here's what's been going on since my last post--about 3 weeks ago.

--I'm back to work.  Thank goodness, because I am seriously broke.  Self-employed and about 5 weeks out of work is not a good combination.  The first week and a half back, I worked mostly half days partly because I wanted to ease back into it, and partly because I still had a shit-ton of doctor appointments. All these specialists are over an hour away so it's really a half day off for one appointment.  It's a full time job to have cancer.  I will say, if I have learned anything from this adventure, is that anyone, I mean ANYONE, is just one medical condition away from being in financial duress.  No one is immune to this. And I even have health insurance!  For me, it's not the medical bills that are the issue (although I haven't seen the brunt of those come in yet), it's the fact that I never counted on me not being able to work.  It never once occurred to me that I could have something happen that prevented me from working.  My financial goal going forward, is to put myself in a better position in case I have a recurrence.

--I'm back to running!  After the 4th week post surgery, the doctor gave me the clearance to exercise again!  It's been so great to be able to move my body and sweat and exercise again, I can't even tell you.  I've probably gained around 5-7 pounds and it will be nice to work that back off.  The area under my breasts hurt the most when I started exercising again--the surgeon tells me that's where they sewed in the alloderm (cadaver tissue used in breast reconstruction).  That pain has since gone away and I really have no pain at all anymore.



--I've had two fills to the expanders and even though my breasts feel bigger than they were, the surgeon tells me they are not.  (Because clearly I know more than he does, right?)  I didn't really believe him until he showed he took out X volume of tissue and we've only put in Y volume of fluid.  Huh.  Well, ok then.  It must just be because they are higher and harder.  But seriously, they are like hard gel-filled mounds.  It's really a weird sensation.  I think I'll probably choose one more fill and call it good.  I want to be at least a little bigger than I was prior to surgery, right?  And I would totally show you a picture but this is a family friendly blog, so sorry!

--I don't need to have chemo.  What a relief that was.  Initially, it wasn't even on my radar since no one had previously suggested that I would need it given that it was not in any lymph tissue on any biopsy.  Then I met the oncologist and she wanted to have the Oncotype Dx test done on my tumor so she could make better decisions about what treatment she would recommend to me.  I WAS NOT happy about hearing that chemo was a possibility.  Fuck that.  Basically, the Oncotype Dx looks at the genetic characteristics of my tumor and then assigns a number on a scale that will tell you if chemo might be beneficial in reducing recurrence rates.  I had already decided that I was going to decline chemo even if the testing showed that it could be helpful.  That was not a road I was prepared to go down.  And we were talking reducing recurrence rates from 15-12% to 8-7%.  I just didn't think it was worth that.  But anyway, my number came in such that chemo would not be beneficial, so Yay.  I started tamoxifen and have been on it for a week and haven't had any side effects yet.  <crossed fingers>

--I did give up the idea of running the Sugarloaf Marathon in May.  I clung on to it for a little thinking that maybe the recovery from surgery wouldn't be that bad.  It wasn't that bad, but I am in no way prepared to run a marathon.  Half marathon, yes.  But full?  No way.  So rather than defer my entry to next year, I decided to switch to the 15K so that I could run with all my Boothbay friends who are signed up this year.  My BQ can wait.  Maybe until the next age bracket.... lol

So basically, things are back to normal ish now.  I'm working every day, I'm running or exercising almost every day, kids and husband are back to letting me do most of the housework <roll eyes>.  I keep trying to play the cancer card, but it doesn't always work.

Everyone keeps asking me when I'm going to have my implants put in which drives me crazy because I don't know.  I literally have no idea.  I guess when the surgeon says it's time, then we decide.  I guess I choose a size and then when I get there, we choose the date.  I'll let you know though! ha




Friday, February 10, 2017

on doing nothing

So apparently, I suck at post-op recovery.

I pride myself on being able to take care of myself.  I don't need help.  I don't really want help.  And apparently, that is not the way to recover from this surgery.

I went back on Tuesday (in a snowstorm, of course!) for a follow-up appointment with the plastic surgeon.  I was supposed to have the last set of tubes removed and be able to wear a regular sports bra.  Unfortunately, the fluid output was too high for him to remove the tubes.

He started to say something about scheduling an appointment for next week and I almost lost it.  That means another weekend in this stupid bra with tubes sticking out of me.  Another weekend of no shower.  Another weekend of shirts that are big and bulky and another week of being out of work.  I swear to God I'm going to kill someone.

He went through the exam and said that everything was healing nicely and I looked good.  But in order to reduce the fluid output, I have to do less.  He asked if I was doing housework and increasing my activity.  Of course, I was.  He said the fluid won't decrease output until I slow down and stop doing things I shouldn't be.

I don't sit down well.  I don't "do nothing" well.  It's almost impossible for me to sit and ignore the dishes, laundry, dirty floors, whatever needs to be done.  It makes me crazy.  But that's the way to get these tubes out.

He made an appointment for me to see one of his associates on Friday and if I behave, I will be able to get the tubes out.  So for three days I'm going to do NOTHING.  If my family wants to live in a shit hole, then I guess we will live in a shit hole.  If no one does the laundry, then I guess they will just have dirty clothes.  Dishes?  They can eat with plastic forks and paper plates.  I don't care.

Fast forward three days.

My output of fluid has been down to less than 30 each day.  I have succeeded in not doing anything, nothing at all but watch tv and read.  It has been horrible and boring and shitty but these tubes need to be out.  There is laundry waiting to be folded.  There are some dishes on the counter.  But for the most part, the family has stepped up and done the work so I don't feel like I have to.

And I got the tubes out!

So happy! 

That's a regular sports bra and NO FUCKING TUBES!!

I got myself a little bit of a belly roll, but what do you want when you're sitting around for 2 weeks.  Still no exercising, no heavy lifting and only light housework.  ugh

But NO TUBES!!

Oh, and even funnier, I think my temporary boobs with just the expanders in, are bigger than my previous boobs.  I haven't even had a fill yet.  lmao


Friday, February 3, 2017

Post-Surgery Update

Happy February first!  It's a new month and I'm looking forward to moving on.  Last Friday I had my double mastectomy and now I'm at home enjoying (?) my recovery.

Friday we had a 7:00 am arrival at the surgery center down in Scarborough, which is over an hour away from my home.   I had to shower the night before with special soap and then again in the morning with the same soap.  I assume it was super-duper bacterial killing stuff cause it dried me all out and made me a little red and itchy.  

Anyway, we arrived at 7:00, right on time and proceeded to sit around until 7:50 before they took me in. This would be my only complaint about the whole experience.  Why not give me a 7:45 or 7:30 arrival time?  There is nothing worse than waiting and waiting chewing the shit out of my cuticles and waiting more to be taken in.  

Once they took me in, things moved along pretty quickly.  I met with the plastic surgeon and he got me marked up, the nurse got my IV going, the anesthesiologist came in with her nurse and started my block, my breast surgeon came in to mark where she was taking out the lymph node and then we were ready to go.  They gave me something that "relaxed" me, which it did, but it also got me all emotional and I was crying and saying how I didn't want to do this.  Thankfully, the kids were at school and it was just my husband and my mom there.

Fast forward to around 4 in the afternoon and I started to wake up.  Not very well, I might add.  Super restless, super irritated and just wanted to go back to sleep.  I think the surgery itself lasted around 4.5 hours and then I took another 2 or so to come out of it.  Time hop for sure.

They wanted me to get out of bed to pee.  Um yah, that wasn't happening.  So dizzy and faint every time I would sit up, let alone stand up.  That didn't happen until around 11 p.m.

They had me pretty rigged up with this bra that was like a bullet proof vest.  I had wires, batteries, pads, tape, and a shit ton of tubes to drain excess fluid.  Super uncomfortable.

 Post surgery--feeling no pain! ha

 Drain tubes sewn into me.  Yah, that's super comfortable.

And the whole thing.

It's kinda hard to find clothes to wear because I don't have a lot of zip up things and I don't buy clothes big so they aren't big enough to tuck all this junk into.  I've been wearing my husbands t-shirts  so I end up looking like that trailer park old woman whose size EE tits hang down to her waist and she gives no fucks and doesn't wear a decent bra.

Thank goodness I'm mostly staying home.  haha

I did have my first follow up appointment with the plastic surgeon yesterday and that was great!  They took out 2 of the 4 tubes and what a relief that is!  He also removed all the tape, batteries and wires so I'm much less encumbered now and oh my god, it feels so much better.  Next Tuesday the other drains come out and I get to wear a regular sports bra.  I cannot wait!

I also met with the cancer surgeon doctor yesterday (there are a million doctors to treat just this one breast cancer--they each do a different thing.  Jesus, it's hard to keep them all straight).  She went over the pathology report from the surgery.  All is as we expected--lymph node clear, Stage 1 (although the tumor was larger than they thought), and I should be able to move forward with my normal life.  I now have another appointment with a medical oncologist--probably to manage the tamoxifen I will take going forward--genetics to see if I have the genetic marker for breast cancer and still appointments with the plastic surgeon.

This is a full time job!  And of course, all the appointments are in Portland which is about an hour away from my home.  #annoyed

But so far, I've only missed one week of work and I think I'll be able to go back after next week.  Unless all these appointments mess me up.  I wish they would be a little more accommodating with regard to how far I have to drive and try to work around my schedule a little bit more.  It's frustrating to have to take a whole day off to get to one appointment.  Especially, going forward, I won't be able to afford to keep missing work.  I'm sure I'll figure it out, but boy, that is stressful.

So double mastectomy isn't as awful as I thought it might be.  People in my small town have been incredibly supportive and helpful.  It's overwhelming how kind people are.  We have had dinners made for us and delivered to our house every night for the past week and for the upcoming week.  You cannot imagine what a relief that is.  It seems like a small thing, like maybe you aren't doing much for the family and you want to do more, but believe me, having food ready each day is huge.  It has been such a help.  I haven't had to worry about getting groceries (that I can't carry or drive my car to), I haven't had to cook, there is very little clean up and new and different food is awesome!

I am so thankful for each and every one of you that has helped our family.  Again, it's overwhelming and I have gotten teary on more than one occasion.  (I don't cry, so that's a big deal.)

my collection of flowers

My dog has been my company this week and I have watched too many episodes of Hoarders (seriously, how do people live like that???).

her and my usual spot on the couch

Looking forward to updating next week with NO TUBES and a regular sports bra!  Stay tuned! 

Thursday, January 12, 2017

T-2 weeks

Today is not a very good day.  Most days I go about my business like nothing is even different.  Because you know what?  I don't feel any different.  I don't feel sick.  I'm still running 20-30 miles each week.  I go to work everyday.  I clean my house and feed my kids and it's life as usual.  I feel like every conversation I have about my cancer with a doctor or with a friend, I feel like it's a story about someone else.  Like I'm reading a book or a news article about someone in the community.

Someone else.
Not me.

But it is me.
It's Me.  I have cancer.  It still feels fake even as I'm typing it.

And today, even though I know that I have the non-aggressive markers, even though I know it's not in my lymph tissue, even though my PCP said it was 100% curable, today, I'm scared.

My breast surgeon called me two days ago with the results of the MRI I had.  I have another spot in the same breast in a different area.  It doesn't change the stage of my cancer or anything about the treatment except I now need to go back for another ultrasound.  She wants a marker in the spot where the second tumor is.  It's another one smaller than 1 cm, but seriously?  Another tumor?  This really pissed me off.  Like it's not bad enough that I'm 46 years old and have one tumor.  I need to have two?  ugh

The right breast was clear so that's good at least.  It doesn't help me much with my decision about choosing to have a single or double mastectomy, but at least that one is clear.  One less tit to worry about, I suppose.

So today all I can think about is the what ifs.  What if I can't work?  What if it comes back?  What if it's somewhere else and I have no idea because I AM HEALTHY GODDAMN IT!!

I am supposed to live to be 80 years old and see my kids get married and have kids and graduate college (not necessarily in that order....) etc etc.  That's what I am supposed to do.  But something like this makes you look at your own mortality at a time when I'm not supposed to have to do that.

This is probably going to be no big deal.  I'll get the surgery, I'll get new boobs and I'll move on.  But today I feel a little scared.  I don't want all kinds of pity and boo hoo's and sobbing though.  That just makes me feel worse.  Probably the nicest thing said to me so far was from someone I never would have expected.  What was said?  I will be there every step.  Almost made me cry.  Almost.

Schedule of events for the next two weeks:

1/18 8:00 a.m.--consultation with plastic surgeon
1/18 2:45 p.m.--another ultrasound and possible biopsy and insertion of clip at other tumor site
1/27 7:00 a.m.--surgery arrival time

Two weeks from now this will be all over with.

At least I hope so.  I hope there are not any more surprises.

Monday, January 2, 2017

bad news that isn't as bad as it could be

So I got to meet with the breast cancer surgeon last Thursday.  It actually went quite well.  I had a whole list of questions to make sure I asked her, but she was extremely thorough and I didn't even need to consult my list once.  She went over every last detail and took a full hour to do so.  (I can't even begin to imagine what that cost....)

The short story is:  I have a small <1cm sized invasive ductal carcinoma.  It is grade 1 which she explained but now I can't remember what exactly that means.  (I do know that it is good!) I am ER/PR + which means that the cancer cells have Estrogen/Progesterone receptors and that is good because then we can use tamoxifen post-surgery to continue to kill the cancer cells if any remain.  It is not good in that I have to remove my IUD because it releases estrogen.  boo  I have really enjoyed not being pregnant and not having my period for 11+ years now.  

It also has -Her2neu which is good because that is a growth factor, negative means it's not growing fast.  Lymph nodes are negative and it has a low ki-67/Mib-1 which is also good and means the proliferation index is low.  I believe she described this as a look at how quickly a single cog might turn in a machine.

The tumor is staged at Stage 1--small tumor size, nothing in the nodes and no metastases.

So, overall, this cancer can be 100% cured.  I have to have a complete mastectomy, including the nipple, because the cancer is too near the nipple for her to save it.  A complete mastectomy because basically my boob is too small to take the amount of tissue she needs to take and leave a decent cosmetic result after.  HAHA  She was very professional in the way that she worded that.  If I were a DD, then NBD, but since I'm an A--, sorry Charlie, the whole thing has gotta go.  Tamoxifen for 5-10 years and I'm good to go.

I have to have genetic testing to see if I have the breast cancer marker, I need an MRI to look at the right breast in more detail to be sure there is nothing there and I have to meet with plastics to figure out what I want to do for reconstruction.

I'm a little stuck on what I want to do for reconstruction.  I mean, obviously, I want to have an implant put in for the left breast.  Plastics will make me a new nipple and that is fine.  But what to do about the other boob is where I am stuck.  She said the two boobs really have nothing to do with each other and the likelihood of a mutation in my other breast is .2-.5%/year.  Pretty unlikely.  Genetics will tell me if I have the inherited risk and if that's the case, that number would be different.  MRI will tell me if I have any changes in the right one that might warrant removal as well.  But assuming they are both normal, I'm not sure what I should do.

Do I remove it anyway as a precaution and have them both reconstructed so they look alike?  Like what 46 year old wouldn't want new perky boobs?  amirite?  Is the recovery longer/more difficult if I do both?  If I choose to just do the one, will they look normal or will one be nice and new and the other old and saggy?  Also, if I keep the right breast I have to have an MRI yearly and a mammogram at the 6 month interval.  Forever.  That's A LOT of follow up.

I don't know what to do.  Honestly, I really don't care about my boobs.  I don't care about having big ones or new cleavage or any of that.  I really just kinda want to keep my boobs I have now.  Unfortunately, that isn't a choice.

I just want to look normal in a tank or a bra top.  That's really all.

So I've now gotten past the point where I'm pissed and I now have a plan.  I know what needs to happen and most of what will happen and I can just get going with getting it all done.  I know I'm not going to die from this and I can probably still run my marathon in May and do the relay in June.  I will be able to watch my kids' games and bring them to field hockey and basketball and baseball.  I'm gonna be able to work and support my family and not worry about my business.  And that has made me very relieved.

------------------------------------------------------------------------------------------------------------------------

Unrelated to the cancer shit, I ran 1049 miles for 2016.  I think that is pretty much on track with 2014.  I didn't total up 2015 but I'll assume it was higher since I was training for a marathon that year.  Probably should have banged out one more measley mile to make it an even 1050, but I said fuck it.

Races Run in 2016:

--Mid-Winter Classic 10 miler  February 1:27:01



--LLBean 10k on July 4 50:14  


--Beach to Beacon 10K August 49:58 *new PR 8:03 pace!



--Race to Respond Relay--7 mile leg from Newcastle to Wiscasset, Maine



--Millinocket Half Marathon December (in northern Maine.  In 12* weather.) 2:02:xx  I should definitely get badass points for that.

me being very shy about being on the news

coming in to the finish.  cold af

I'm still an InknBurn ambassador for another 6 months and then they will be cleaning everyone out and getting all new.  They have a bunch of cool new stuff so if you haven't checked them out lately, you should.

Happy New Year to everyone.  I had a lot of stuff planned for this year race-wise so I hope I get to do it all.  I'll likely be updating here regarding my treatment and surgery and recovery so stay tuned if you want to hear about that.

Any thoughts on the other boob?  New set or just the one?